Craniosynostosis surgery is offered when a seam between the bones of the skull has fused early, and it is done to make room for the growing brain and to correct the shape that fusion has forced. It is not cosmetic surgery. Which operation your baby is offered depends mostly on age, because the smaller endoscopic route is for younger patients.
Does My Baby Really Need Surgery for Craniosynostosis?
Surgery is the usual treatment once craniosynostosis is confirmed, and it is usually done soon after diagnosis. The reason is the risk of leaving it untreated, more than the look of the head. Cases at the milder end of the range are watched instead of operated on.
Alam po namin na nakakatakot ang salitang opera para sa isang sanggol. That fear is reasonable.
What the Operation Prevents: Pressure Inside the Head and a Shape That Will Not Correct Itself
The operation frees the fused skull so it can grow again. Surgeons are trying to prevent two things: pressure inside the head, and a head shape that will not correct itself.
Raised pressure inside the head has been documented in about 15 to 20 in 100 children with a single fused seam (15 to 20 percent). It has been documented in about 1 in 3 children with a craniofacial syndrome, a condition that affects the skull and face together (one third). But most patients may have no warning signs or symptoms for a long time.
When Does a Team Watch Instead of Operating?
Not every unusual head shape leads to an operation. One British unit operated on 231 children over 20 years for a fused seam down the middle of the forehead. It offered surgery for cases at the moderate to severe end of the range. A ridge that can be felt, with no other feature, was at the mild end. Kaya po may mga batang binabantayan lang muna, at hindi ibig sabihin nito na binabalewala sila.
If a team proposes watching, ask directly what they are watching for and when they will decide.
What Does Craniosynostosis Surgery Actually Do?
The operation removes or opens the fused seam. This releases the skull, so the growing brain has room to push it outward again. Then either the skull is left to regrow into shape, or the surgeon reshapes it during the same operation. This second step is what makes the techniques different from each other.
Taking Out the Fused Seam: Enough on Its Own Only While the Brain Grows Fast
A closed seam cannot grow, so it is taken out. Taking it out is enough on its own only while a baby’s brain is growing fast. The later it is done, the less the release does on its own.
Reshaping the Skull During the Operation
Reshaping means the bones of the vault are cut, moved and fixed in a better position during the operation itself.
Which approach a center uses depends on the seam involved, the child’s age and the team’s own experience. Ito po ang karaniwang pinag-uusapan sa unang konsulta.
Seek care now
Which Signs Mean Your Baby Should Be Seen Now?
Some signs need the emergency room now. Others need an earlier appointment. Both lists below are this clinic’s own advice to families.
Go to the nearest hospital emergency room now for any of these:
- Repeated vomiting with unusual sleepiness, or a baby who is difficult to wake
- Bumbunan, the soft spot, tense or bulging while your baby is calm and held upright
- Eyes that will not follow a face, that drift, or that suddenly turn
- A seizure
- A baby who stops doing things they were already able to do
- After an operation: fever with a red, swollen or leaking wound, or fluid collecting under the scalp
Ask for an earlier appointment for any of these. Do not wait for the next well-baby visit:
- A firm ridge you can feel along a seam of the skull
- A head shape that was already unusual immediately after birth
- A head shape that is more obvious at four months than it was at one month
- A head shape that has not improved at all despite changing your baby’s position
- Head circumference, the size around the head, crossing lines on the growth chart from visit to visit, up or down
Raised pressure inside the head can cost a child their sight permanently. Its risk keeps rising for as long as a fused skull is not operated on. A normal eye examination does not rule it out. Fundoscopy, the check of the back of the eye, and imaging do not always match what pressure recordings show.
Endoscopic or Open Surgery: What Is the Difference?
The endoscopic operation removes the fused seam through small incisions. The skull then regrows into shape with the help of a helmet. The open operation uses a long incision across the top of the head and reshapes the vault in the operating room (OR) during the same operation.
The Endoscopic Operation: Shorter, With Less Blood Loss
The endoscopic operation is the smaller of the two. One center reported on 235 babies operated on one after another. The median (middle) operating time was 55 minutes, and the median blood loss was 25 milliliters. About 96 in 100 babies (96 percent) went to an ordinary surgical ward instead of intensive care. The median stay was one day.
Afterward, your baby wears a helmet for some months. The helmet is part of the operation, not an optional extra.
The Open Operation: Longer, With More Blood Loss
Open surgery does the reshaping during the operation. So it takes longer and loses more blood. A review pooled 34 studies and 11,554 patients. Compared with open surgery, endoscopic surgery used about 153 milliliters less transfused blood and was about 129 minutes shorter. The hospital stay after it was about 2.8 days shorter.
The same studies found no difference in the shape achieved. The cephalic index, the measurement used to judge the corrected shape, showed no difference between the two. For the shape they achieve, one is not better than the other. They are different operations for different ages.
Which Operation a Surgeon Offers Depends Mostly on Age
Age matters most. After age come the seam involved and what the center can do. Open surgery is a reasonable choice in older children. It is also the choice where there is no endoscope, or no surgeon experienced in the endoscopic technique. Ask whether your center offers both.
Is There an Age Window for Craniosynostosis Surgery?
Yes. The window applies to the endoscopic route, not to surgery in general. The endoscopic operation depends on rapid brain growth to reshape the skull afterward, so it is done in the early months. Open reconstruction works at older ages that the endoscopic route cannot reach.
When Does the Window for Endoscopic Surgery Close?
Published studies operate early. Across 25 studies of endoscopic repair of the seam along the top of the head, the average age at surgery was 3.3 months.
Doctors still disagree on where the age limit is. In a review of 107 endoscopic operations on the midline seam, a quarter of babies operated on after three months reached the target shape measurement. The authors still concluded that older babies may benefit.
After the Endoscopic Window, Open Reconstruction Is Offered
After the window, open reconstruction is the operation that remains. Ang mahalaga po ay hindi mawala ang pagkakataon. If a head shape worries you, show it early to your pediatrician or a pediatric neurosurgeon. Do not watch it for another three months.
In a national analysis of 6,010 operations, babies operated on between seven and 12 months had higher odds of a complication in the hospital than babies operated on at zero to six months.
Can a Child or Adult Who Was Never Operated On Still Be Treated?
The deformity can still be corrected, but as a much more complicated operation, decided together with the patient. Operating in infancy is preferable. A fused seam that was never operated on does not open by itself. The risk of raised pressure inside the head keeps rising for as long as there is no operation.
What Are the Risks, and Will My Baby Need a Blood Transfusion?
A transfusion is likely with open surgery and much less likely with the endoscopic route. In a national surgical database of 3,924 repairs, a blood transfusion was the most common event recorded, in about 67 in 100 patients (66.5 percent). Serious complications are uncommon and death is rare.
How Teams Reduce Blood Loss and Transfusion
Teams work to reduce blood loss. Tranexamic acid, a medicine that slows the breakdown of clots, reduces both the blood lost and the blood transfused in this surgery. In the pooled trials, 258 children received it, and no side effects from the medicine were recorded. Ask your team whether they use it.
Other Complications, and How They Differ Between Endoscopic and Open Surgery
In a national study of 3,426 American repairs, about 10 in 100 babies (10 percent) had an acute complication, most often bleeding or a breathing problem. Deaths were fewer than 10 in 1,000 babies (under 1 percent).
Complications also differ between the two routes. In a national study of 1,099 patients in hospital, surgical complications happened in about 5 in 1,000 endoscopic cases (0.5 percent). They happened in about 8 in 100 open cases (7.9 percent). Most of the difference came from tears in the covering of the brain. Deaths in the hospital did not differ.
How Long Will My Baby Be in the Hospital?
Expect about one to two days after endoscopic surgery, and three to five days after open surgery. In the national comparison of patients in hospital, the average stay was 1.6 days after endoscopic repair and 3.7 days after open repair. A separate study of 3,426 repairs found an average stay of 4.2 days.
Your own center’s answer may differ. Ask for it early. It helps you plan leave from work and someone to stay with your other children.
What Is Life After Craniosynostosis Surgery Like?
Most children go back to their usual daily life. They have follow-up appointments, and a helmet for some months if the endoscopic route was used. The outcome depends on the child. The long-term questions parents ask are about the shape, about school, and about whether a second operation will be needed.
How Do Children Do in Development and School After Surgery?
One study tested 81 school-age children operated on for a fused midline seam. General intellectual ability was no different after endoscopic repair and after open repair, with adjusted average scores of 100 and 103. Their differences from unaffected children were within the normal range.
A study at five centers tested three-year-olds with a single fused seam. Their average scores were three to six points below matched children, meaning similar children used for comparison. The age at repair was not strongly linked to how they scored. Kaya po nagpapa-check-up pa rin ang mga bata kahit maayos na ang hugis ng ulo.
Follow-Up: How Likely Is a Second Operation?
A second operation can happen, but it is not likely. In a national database of 3,924 repairs, about 2 in 100 babies (2.4 percent) had a reoperation, meaning a second operation. About 3 in 100 (3.0 percent) were admitted to the hospital again. In the pooled comparison of the two routes, reoperation was less common after endoscopic surgery.
What Should a Doctor Send With a Craniosynostosis Referral?
Send the head circumference measurements with their dates. Send photographs of the vertex, occiput and both profiles, meaning the top, the back and each side of the head. Send the birth and pregnancy history, any family history of skull shape or craniofacial anomalies, and any imaging already done, on disc and not as a report alone. Refer because of the shape, without waiting to be certain, and refer early.
Which Signs Make the Referral Urgent?
The thresholds below are this practice’s own. Any emergency sign listed above means the nearest emergency room now, not a referral. For any earlier-appointment sign listed above, refer instead of reviewing in three months. Refer also for any of these:
- Orbital, ear or facial midline asymmetry alongside the skull shape
- Head circumference crossing percentile lines in either direction
- Any suspicion of a syndrome, including hand, foot, airway or midface features
Do Not Wait for a Scan Before Referring
This part is for doctors referring a baby. Do not wait for imaging before you refer. Expect a clinical examination that names the seam, a decision on imaging, and a discussion of both operative routes, not just one.
Parents: if your pediatrician has ordered a scan, keep that appointment and ask for the referral at the same time.
Bring and ask
What to Bring and What to Ask at the Consult
Bring these to the consult, and ask these questions.
Bring:
- The baby book, with every head circumference measurement in it
- Photographs of the head from directly above, from behind and from each side, taken a few weeks apart if you have them
- Any scan already done, on disc as well as on paper
- A note of anyone else in the family with an unusual head shape, or with hand, foot or hearing differences
- Your PhilHealth membership details and any HMO card
Ask:
- Which seam is involved
- Is my baby still inside the endoscopic window
- Which operation are you offering, and what would change your mind
- Will a helmet be needed afterward, and for how long
- How likely is a transfusion
- Do you use tranexamic acid
- How many nights should we plan for
- What will this cost at this hospital
- What does PhilHealth cover here
- Who do I speak to about the balance
Take the cost questions, including who pays for craniosynostosis surgery in the Philippines, to the hospital’s own social service or billing office. A website cannot answer them.
Frequently Asked Questions
Can craniosynostosis be treated without surgery?
Craniosynostosis that needs treatment is treated with an operation. No medicine or helmet can open a fused seam. The mildest end of the range is watched instead of operated on. Helmets are used for flattening caused by the baby’s lying position, and as part of the plan after some endoscopic operations.
Will my baby’s head look normal afterward?
The shape of the head usually improves a lot after craniosynostosis surgery. The two operative routes give comparable results when the shape is measured. Still, the result depends on the child, and no one can promise a particular outcome for one child. Follow-up visits are there to track it.
Is one operation usually enough?
One operation for craniosynostosis is usually enough. A second operation is recorded in about 2 in 100 babies (2.4 percent) in large national datasets. In one British unit, about 6 to 7 in 100 patients (6.5 percent) had a second operation over an average follow-up of six years.
Will the anesthesia harm my baby’s brain?
The strongest evidence on anesthesia and a baby’s brain is reassuring, but it does not cover this operation exactly. In a randomized trial of infants, just under one hour of general anesthesia made no difference to intelligence at five years, compared with awake regional anesthesia, where only part of the body is numbed.
Is craniosynostosis surgery done in the Philippines?
Yes, craniosynostosis surgery is done in the Philippines. Two operations have been done in Manila and published in medical journals: open cranial vault reconstruction, which reshapes the top of the skull, for a fused midline seam, and fronto-orbital advancement, which moves the forehead and brow forward, in an infant with a craniofacial syndrome. I operate on craniosynostosis in children at the Philippine Children’s Medical Center (PCMC) in Quezon City, and my team does both the endoscopic and the open operation.
What to do now
What to Do Now
If any of the emergency signs above are present, go to the nearest hospital emergency room now. Do not wait for an appointment.
You can book a consultation directly, or your pediatrician can refer you for a pediatric neurosurgery or craniofacial consultation. Bring the baby book, the photographs and any scan already done. Ask whether your baby is still inside the endoscopic window. That part of the decision has a time limit.
If you would like me to see your baby, my clinic is at PCMC, Room 22, Quezon City, on Wednesday from 2 PM. If your family lives too far for that trip, I also see families in an online consult, booked on the consultation page.
Huwag po kayong mahiyang magtanong ulit kung may hindi malinaw. Karapatan po ninyong maintindihan ang bawat hakbang bago kayo pumirma ng kahit ano.
See sources
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